Confidence Booster

I was a bit alarmed when they sent us home from the hospital after only 8 days.  They were talking about 3 weeks.  But they said that I can do the same or better for him at home.  Are they right????

Well, I can "check his vitals" just like they can.  No big deal.  I know better than they do what normal for him is.  I can give him meds and oxygen just like they can now that he's off IV antibiotics.  I can feed him.  The biggest difference is: I'm one, they are many.  

And the hospital bed.  That thing requires a college level course in mechanics to operate, but it's way cool.  It can go into just about any possible position.  It's better than a carnival ride!  And it puts Sam in the perfect position for CPT (Chest Physical Therapy).  He needs to be in the right position so that gravity helps his weak muscles get the stuff out.  And you can raise it or lower it to save the Respiratory Therapist's back.  Cool.  

At home, we have an Ikea bed.  VERY low to the floor so Sam can get in and out without falling.  (Hospital bed also has crib rails)  But this morning, I discovered that all you really need for proper drainage is a portable DVD player.  You put Curious George on the floor, press play and Sam scampers over to the edge of the bed, hangs his head over and thrusts his butt in the air and voila! he's in the perfect position for postural drainage.  I pull up a chair and start whacking him on the back.  He giggles.  

Maybe we are better off at home.  I can sleep without fear that six doctors in white coats will hear me snore and watch me drool.  That's gotta be good.

Pneumonia

Waking in a strange place, groggy from too little sleep, I can't remember where I put my glasses.  So bleary, groggy and frustrated, I begin to pat around; hoping I can find them with my hands rather than my feet.  Disoriented, I am not sure where I am, but I know where Sam is.  I don't need to see to find his beloved head and check that he is breathing and the tube is still in his nose.

He is okay.  The world shifts into place.  I remember that I carefully placed my glasses under the couch so I wouldn't step on them.  Now I can see well enough to attach the monitor to his finger and check his heart rate and oxygen level.  Yeah.  He's okay.

I slept on a mat on the floor by the couch.  Sam's sleeping on the couch, the oxygen tube still in his nose.  I'm in my own living room.  I remember Charley carefully not stepping on me as he went to work.

Time for tea and then I'll start his nebulizer treatments again.  I have to give the first one before he wakes up in order to get enough in each day.  He's not eating, I have to try to get him to eat something before 2.  He takes his next pill at 4 and he can't have any milk products between 2 and 6.  I never realized how large a percentage of the things he will eat are milk based - even Ensure!

Got a fabulous new cookbook called "I Can't Chew." It's full of nutrition advice and recipes for people with chewing and swallowing problems.  But I'm too tired to read it.  I'm too afraid I'll lose Sam before I have a chance to try all the recipes.  I look at the cover and go back to the trashy novel.  Or knit.  I thank God for yarn and trashy novels and tea when Sam is sick.

Two nights ago, I was sure he was sick enough to be admitted.  But, since I've been through this so often, I knew it was better to wait for the doctor's office to open than to call or visit the ER in the middle of the night.  You wait in the comfort of your own home instead of in a cold, hard waiting room chair.  But I couldn't sleep because I was so worried.  So I started packing my overnight bag.  At 8:45 I called the office, at 10 the doctor called me back.  After listening to my experienced, coherent report, she said, "Well, it sounds like you have everything under control.  I'll call in a prescription and, if he doesn't turn around in a few days, you should bring him in."

Under control?  I wouldn't describe it that way.  But it's a new day.  I found my glasses without the aid of my sight.  The tube which feeds air into Sam's lungs didn't get wrapped around his neck and strangle him in the night.  I don't have to think about what to wear, I'll just grab something from the overnight bag still sitting on the chair.  Himmat taught me how to make good strong Indian Chai recently.  On the whole, it's going to be a good day.

Sam's Condition (just the bad stuff)

I had to write this for a social worker.  It was hard.  So I thought I'd post it, because it felt like a challenge like this should be memorialized - or something.  Either I'm just feeling sorry for myself or else I'm really proud of my ability to spell arcane medical words.

Sam Forsberg is a 29 year old boy with the mental capacity of about an 18 month old.  He is about 4 1/2 feet tall and, on a good day, weighs 80 pounds.  If he goes too much below 75 pounds he gets sick from being too thin.  He has aphasia (which means he can't figure out how to talk) and dysphasia (difficulty swallowing).  He also has a very high arched palate which may be part of his swallowing difficulties.  He has bi-lateral choroidal coloboma (which means a hole in the back of both of his eyes) and strabismus and nystagmus (which means his eyes wobble up, down and sideways).  The last time we took him to the eye doctor, she said he also has some astigmatism.  He has a certain degree of ataxia (which means he shakes or trembles a lot especially when tired.)

All of this is because something went wrong about a month before he was born.  Maybe he had a stroke.  He was born with brain damage in the back part of his brain.  He can't walk because he has damage to his vestibular nerve and so he has very little sense of balance.  He isn't very strong, tires easily and has very low muscle tone. He also doesn't have a very good temperature regulator, so I can't take him outside if the weather is too cold or too hot.  He has asthma, so I am not supposed to take him outside on "ozone action days".

He can't chew, which means everything he eats must be pureed or mashed.  According to the dentist, this means his teeth are MORE likely to decay than if he actually chewed, so I have to be very careful to brush his teeth often.  If he swallows something too thin, he chokes and some of it goes into his lungs.  If he swallows liquids that are too thick, he chokes and stuff goes up his nose.  Sometimes things that he has swallowed half way come back up into his nose and then, we think, go back down into his lungs.  He has very extensive nasal polyps because of this nasal regurgitation.

All of his life he has had a lot of congestion.  No one is quite sure why.  He doesn't seem to have any allergies, although he does have asthma because his lungs are so chronically full.  His nose is always running and he often has huge amounts of mucus clogging his nose and throat.  He had almost constant ear infections as a child.  The muscle that is supposed to help his ears drain is either missing or non-functional because of his high palate.  We lost track of how many different ear doctors tried to put tubes in his ears.  (I can think of 5 off the top of my head)  The tubes never lasted long.  But his ear drums have been perforated so many times that he seems to have developed permanent holes in them now, so we don't have as many ear infections.  This is good because he is resistant to some of the antibiotics and allergic to others because he's been on them so often.  Now we try to avoid using antibiotics as much as possible.  He usually gets pneumonia about once a year and we give him antibiotics for that. 

About 6 years ago he had a very bad bout of pneumonia and had to be hospitalized.  At that time we met Dr. Mutlu.  He has been caring for Sam's lungs ever since.  He discovered that Sam also has Central Sleep Apnea  which causes his Co2 levels to rise.  Sam is in compensated respiratory acidosis.  This means his body is working overtime to compensate for the extra Co2 in his blood.  If the Co2 rises too much, he dies.  So bringing down the Co2 has become a central focus of our lives the last 6 years. 

We tried for about a year and a half to get him to wear the bi-pap machine, but finally gave up because I wasn't getting any sleep and started to see snakes in the corner of the room!  Instead, I keep a close watch on his blood oxygen level with a pulse oximeter.  I try to keep it between 87 and 95.  If it gets too low, I have an oxygen condenser at home and I can give him oxygen.  It never gets too high naturally, but sometimes it can get too high with the oxygen condenser.  If it gets too high, the sleep apnea gets worse and his Co2 levels rise.

He has always seemed to sleep best between the hours of about 4 am and 11 am.  I used to dress him in his sleep and take him to the car to get him to school or program.  He was always late.  I would feed him in the car when he woke up.   Dr. Mutlu said this should stop.  It is vital that Sam sleep whenever he can.  When he sleeps deeply, he breathes deeply and this is the best way to bring Co2 levels down.  So we let him sleep.  He often takes a nap in the afternoon as well.  This means that he has been unable to attend Esperanza very often.  When we have a very good day, I bring him to visit for a few hours from about noon to when they close at 2:15. 

In addition to letting him sleep and preparing all his meals carefully so he won't choke or regurgitate, there are also his breathing treatments.  I give him chest PT with a chest vibrator 2 or 3 times a day.  This takes 30-45 minutes each time.  I also give him a nasal irrigation twice a day and nebulizer 4 times a day with medications prescribed by Dr. Mutlu.

I have three recent examples of how necessary all this is.  First: in December my husband had surgery for prostate cancer.   He came home with a catheter and was very weak.  I spent a great deal of time taking care of him.  I skimped on Sam's treatments.  Sam got pneumonia.  Second: whenever I fail to keep all the food and sleep and treatments in balance, Sam is up all night whimpering.  Third: When we went to see Dr. Mutlu on February 22 of this year, Sam's blood gasses were stable!  After 6 years of rising blood levels, and all my efforts to slow the rate of rising, we have finally stabilized him!  His blood levels are still much higher than normal, but this is a great victory.

So, in summary, a brief list of his many diagnoses would include: profound mental retardation, ataxic cerebral palsy, chronic hypercapnic respiratory failure, bronchiectasis, central sleep apnea, asthma, dysphasia and aphasia.  There's probably a several more, but that's all I can think of at the moment.  Dr. Mutlu speculates that he has Joubert's Syndrome.  His small stature is due to failure to thrive in his first year.

Control Issues

I just don't get it.  I did everything right.  All I wanted to do was go to church and sing in the choir.  So yesterday I spent the whole day focused on doing everything possible to make sure Sam got a good night's sleep.  I changed the clocks forward first thing in the morning hoping to "psych" us all into the time change.  I fed him regularly.  I made sure to pay attention to him so he didn't feel ignored.  I did his 45 minute treatments three times and I made sure his medications were correctly balanced.  I even changed the furnace filter because it was looking a little gray on the theory that clean air helps him breathe better.  (It's just a theory.  The allergist says he's not allergic to anything.  His breathing problems are because of the way his head is shaped and because of the way his brain works.)

I bragged to a friend that I had finally reached acceptance of the fact that my number one priority is managing Sam's lungs.  If I do the treatments correctly and get him to the chiropractor twice a month, he is fine.  Even the apnea is reduced.  If I let the schedule get out of sync, he is miserable.  And so am I.  It's a very plain fact.  My life is ruled by this routine.

How nice.  How safe and predictable.  I am secure and in control of my life.  Keep it simple and keep it sane.  That's my motto.  Stress and failure occur when I rebel, peace and success are the result of faithfulness.

Wrong.

In spite of doing everything right, Sam and I were up until 3 am.  He was groaning in sinus pain and trying to be brave.  I was tender and sympathetic and trying not to hit him over the head or give him whiskey.  I WANT TO SING IN THE CHOIR!!!  Can't he get that?

 How deeply spiritual I am not in the middle of the night.  On Friday I did the Stations of the Cross and Taize and then Luis gave a very lovely bi-lingual talk.  I sang.  I read really good scripture verses.  I got to see so many of the people I love.  Rosie and I actually talked about how important it is for choir members to worship as they sing.  It makes a big difference if we worship instead of perform.  I don't do either.  I just love to sing with other people.  Well, maybe that's worship on a very primitive level.  I only get to do this twice a month on a good month.  I miss those two Sundays often because of Sam.  

Two weeks ago I gave a talk at another church.  One of the major themes of my talk was we are not in control.  Why do bad things happen to good people?  Because bad things happen to all of us.  God does not cause them to happen.  They are not part of God's divine plan.  The Bible is full of stories about bad things happening for no reason or because of an enemy.  Whether the enemy is a person or an event or Satan, bad things happen and people in the Bible turn to God and ask for help.  Joseph says to his brothers, "You meant it for evil, but God meant it for good."  Paul says to the Romans, "All things work together for good."  In other words, God answers prayer and comes to us in our distress and redeems the situation.  Sometimes.  God redeems us always.  Eventually.

Last week I got to go to SPRED church.  We all three made it and Charley played with that choir.  It is a wonderful sound.  I do worship when I go to SPRED church and especially when I hear Charley playing lovely music.  The message from Fr. Jim was something like "Jesus says to you today where you are standing right now is holy ground.  Let the fire of my divine presence grow within you.  Nurture it."  I'm home this morning.  Where I stand is holy ground. I have a Bible and some really good tea and Sam's asleep.  I can go upstairs and turn on some music and nurture the divine in me.  That is always a possibility.  

I spend soooo much time alone I'm becoming a Desert Mother and not by choice. 

I have often said that I don't have any choice or control over the bad things that come to me.  BUT I do have a choice about how I will respond to them.  That's the part where God comes in.  God is apparently not going to intervene and make Sam healthy.  But God can help me appreciate my time with him and love my life and manage the difficulties, if I ask.  Although I wouldn't say no to a healing...

But in spite of all my wisdom and 28 years of learning the same lesson over and over and over again, this morning I'm just grumpy.  I didn't get enough sleep last night, I was scared and unsure what to do for most of it and this morning I don't get to sing with the choir.  Life's not fair.

Do you know that the divorce rate among families who have a child with disabilities is somewhere around 98%?  The fact that I make it to church at all is due to the fact that we remain a two parent household after all these years.  There's a miracle.  Charley is playing his saxophone this morning in our old church.  I hope he gets a lot of love and gratitude.  I hope he comes home feeling good and refreshed and ready for another week at work.

I hope I get to go to church next week.  AND SING!

Sam's Health Issues

I spend a lot of time and energy pretending we're just like everyone else. Sam may be short, but he's other wise normal. But that's just denial. It isn't normal for a mom to change her 27 year old son's diapers for one thing. It isn't normal for a 27 year old son and his mom to have such a GREAT time singing along with Elmo. Every year we have what's called a "Staffing" at Esperanza and it starts with a conversation about his strengths. The first thing mentioned every year regardless of who is participating is his smile. He really warms a room. The second is usually something about his delight in buttons and things that vibrate.

He misses about half of the school year because I just can't get all the things balanced that are required to keep him healthy. So just for a minute, I'd like to "go public" with what I have to do every day to keep him going. First of all there's food. I have to puree every thing and thicken most liquids before he gets them. But he doesn't like baby food or food that looks or tastes boring. So I have to figure out ways to make pureed food look good. We also go out to dinner a lot because he always eats well at restaurants. There's a limited amount of things he can eat at restaurants. He usually has a cheese omelete and pancakes drenched in butter and syrup. I make sure he gets 3 Ensure or Boost a day.

I change him, dress him, brush his teeth, wash him and clean up his messes. I try to figure out things to keep him occupied besides watching videos and sitting on his bed all day with a vibrating toothbrush. He WILL sit on his bed and drool with a toothbrush unless I motivate him to do something else.

His medical issues require several machines to keep him going.
First: Sleep Apnea. He needs to get at least 4 hours of good sleep in every 24 or he will get very sick. Unfortunately, it's usually somewhere between 4 am and 1pm. I've been trying to adjust this pattern his whole life with only partial success. We tried all last year to get him used to the bi-pap machine in the hopes that this would help him sleep more. I tried putting it on him when he went to bed. He would wear it until I left the room. I tried putting it on him an hour after he went to sleep. But that meant staying up until he went to sleep. And he doesn't go to sleep until early morning. So I tried going to bed and getting up at 4 am and putting it on. He wore it for a while, but it was always off when I got up at 6. So I tried putting it on at 6. This worked for awhile. But eventually he just started getting up at 6 with me. So I went back to getting up at 4 and he got so he would rip it off the instant I put it on him. I leaving the machine (which is very loud) on with out putting it on him for a couple of nights and then putting it on him again. But he still took it off the minute my back was turned. I started seeing snakes in the corner of the room and crying at nothing at all and basically losing my mind from lack of sleep. So now I check his oxygen at night and if it's low, I put him on oxygen all night. He tolerates that okay. I also check it at 6 am to be sure it isn't low. It is usually fine. I want it to be between 89 and 95. If it gets too high, the brain thinks it can stop breathing and that makes the CO2 levels go up.

The biggest danger from sleep apnea is the CO2 blood level that develops which can actually kill you if it gets too high. He recently had an arterial blood gas test which showed that his CO2 level is the same as it was a year ago. I think this means that there's no point in continuing to try to adjust to the bi-pap machine and I'm going to ask the doctor if we can get rid of it. Then we can go back to the same problems we've had his whole life - which in retrospect were better than this last year when I was trying so hard to fix them! I think his CO2 levels have been gradually rising over his entire life and we should continue to monitor them. When and if they get significantly higher, we'll re-address the bi-pap machine and even consider a respirator that connects to his throat at night.

Second: Bronchiectsasis. He frequently has so much mucus that he can't breathe and gathers in huge quantities in his lungs making it difficult to breathe and easy to develop pneumonia. This is not cystic fibrosis but it is very similar. We don't know why he develops so much mucus. We have a number of machines to address this problem and they must be done in the morning when he wakes up and at night before bed and sometimes when he gets home from school. Going through the whole routine can take 30-45 minutes. But even when I do them faithfully, he still gets too much mucus sometimes and then I have to keep him home to monitor him. We have a nebulizer through which we give him medication to open his lungs up and make them stronger. We have a nasal wash machine and we have a chest vibrator that was developed for children with cysctic fibrosis. We also do a lot of manual chest PT. We have a suction device to help when he's got stuff stuck in the back of his throat. (Mostly mucus)

Third: Aspiration and swallowing difficulties. We had a swallow study done this summer and discovered that WHEN HE IS FED CAREFULLY he doesn't aspirate food. Obviously, aspirating food into his lungs is a very dangerous thing because he already has challenges in his lungs. HOWEVER if he is given thickened liquids or liquids in a commuter mug or sippy cup and purreed or very soft foods, he doesn't aspirate. Cake and donuts must ALWAYS be made soggy before he eats them. He must not have anything "crumbly" because it is easy to aspirate. There is a Mexican cake called Dulce de Tres Leche that is the perfect consistency. I always think of that cake when I am adding liquid to his cakes. For example, when we go to Starbucks, I order him a Traditional coffee Cake and a Mocha frappichino in the bottle. Then I pour the frappichino into the coffee cake until it is soggy. It tastes like Tiramisu and he can eat it just fine.

Food does go up his nose if he has more than about a teaspoon full of food in his mouth at a time or if it is the wrong consistency. This means more mucus, infected ears and possibly aspiration into his lungs although this has not been seen in the tests. Again, careful monitoring of his eating is essential. We are considering botox treatments to decrease the amount of saliva in his mouth hoping that helps. But insurance may not pay for it.

So he gets sick when his lungs are compromised by aspiration or just an accumulation of mucus or when he hasn't been getting enough quality sleep. He also gets sick when his weight goes below 75 pounds. (This makes my grocery shopping odd - I buy low calorie, low fat stuff for me and the opposite for him. And try not to eat his food!)

I also take him to Target and we look at stuff for hours and then we meet Eileen at Starbucks. See, it's not all work and no play!

Okay. So I've said it. Now I'll go back to pretending this is just a lot of fun.